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Celiac, One Year In.

If all goes to plan, this will publish while I’m out on the Madone, getting in some miles. How apropos.

It’s basically been a year since I came to find that I’m a Celiac. I’m still not sure if I capitalize that or not.

I’ve learned a lot of things over the past year–some good, some bad.

I’ve learned that I have a much higher tolerance for pain than I previously thought, and I’ve learned that you’re really not in pain unless your whole body is in pain. Bad.

I’ve learned that no matter what I do for diet or exercise, I’m currently frozen at 145-150 pounds. Bad?

I’ve learned that I cannot progress with physical ability as rapidly as I’d like to, or as rapidly as I expect to. Bad.

I’ve learned who my friends and family are. I’ve learned how amazing it is to have friends who are patient enough to not only put up with my whining about disease, but who deal with my bizarre dietary needs. Seriously. It’s one thing to invite a friend over for dinner. It’s completely another to do so knowing that you have to cook differently, not cross-contaminate dishes or cutlery, not make a simple mistake (like using butter as a cooking lubricant). It’s amazing to see that people are willing to put up with the pain in the ass that is my eating. Good.

I’ve learned that some people are not willing to put up with my peculiarities. Literally. As in, “if you want to come over, bring your own food.” Or, in one case, as in, “we’d rather not eat, because it’s too much of a problem to go somewhere that you can eat.” I’m not sure whether that is good or bad. Probably good.

I’ve learned just how sensitive the human body is at detecting substances that it doesn’t like. Bad.

I’ve learned that elimination diets are a slippery slope. I started by eliminating gluten. Then dairy. At present, I’ve also eliminated soda, alcohol and artificial sweeteners. Open a cupboard in your kitchen and pull out a product. Look to see if it has any form of gluten, or any form of dairy (liquid or powdered), or artificial sweeteners. It’s a lonely world out there. Bad.

I’ve learned that, even with all of the health crap going on, I’m still able to be a better, stronger cyclist by simply putting in the time. Perhaps more time than I’d like, and perhaps a slower reward curve, but it works. Slowly. Good.

I’ve learned that I value an honest reward (a slow, but earned result) over a dishonest reward. I’ve looked the opportunity to dope, legally, in the face and turned it down. Good.

I’ve learned that I cannot make it more than a day–maybe two–without the support of my wife. There are little roadbumps every day. She makes them easier. Good.

I’ve learned how perceptive my daughter is. When she makes pretend food, she now offers me a bite, and tells me that it is ‘gluten and dairy free.’ While I am so very proud of how sensitive she is, I also worry about the long-term ramifications of living with a parent who has some very unique issues. Good. I think.

I’ve learned to be more patient. Food is often served 2-3 times before a new restaurant gets the order right. Ordering takes longer. Finding something to eat in a gas station is a challenge. Good and bad.

I’ve learned that, even with all of the dietary changes I’ve made and the incredibly healthy diet that I’m eating, I’m still reliant on supplements, vitamins, and related potions to maintain basic levels of good health. Without iron, I’m anemic, for example. That points at some deeper rooted absorption problem, but I don’t know what it is as of yet. Bad.

I’ve made huge changes in my personal and professional life that have had incredibly rewarding, positive outcomes. I’ve taken some risks–calculated risks–and thus far, things are going well. Those changes have had a positive health impact for me, as well. I’m pretty steadfastly convinced that, had I made those changes a few years ago, my blog would just be about cycling, and not about celiac’s. But…I suppose we’ll never know. Good.

Completely unrelated to celiacs, eating, diets, etc., I’ve learned what an amazing group of friends I have. There are people that I didn’t know 2 years ago, who I now count among my closest relationships. There are levels of trust that I didn’t think were possible outside of family and marriage. Good.

And on that same note, I’ve learned to accept other cyclists as an extension of my own senses. If I’m riding in a pace line and someone calls out an obstacle, a car, a pothole…whatever…I’ve learned to go with it, without having to see it first. I have the great benefit of riding with guys whose skill and goodwill can be implicitly trusted. It’s pretty amazing, really–and it makes solo rides all the more intolerable. Good.

I’ve learned not to try anything described as non-dairy cheese. Trust me. Good.

A little over a year ago, before I came to the conclusion that I have celiac’s, one of my neighbor’s children was dealing with pretty severe skin issues that were, at first, blamed on possible food allergies. My wife would tell me about the (seemingly crazy) things that their family had to do to accommodate a gluten free diet. Little did I know that I’d be pushing that same envelope, just a short time later. I’ve learned to be flexible in ways I didn’t previously think possible. Much of that, again, is attributable to the support I get from my amazing wife, my great friends, and my amazing wife. (See what I did there?)

A year older. A year wiser. A year more patient. A year healthier? A year under 150 pounds. A year of learning.

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4 thoughts on “Celiac, One Year In.”

Just stumbled across your blog searching on Celiac and cycling centuries. I am planning my first century in May after being diagnosed with Celiac. I haven’t done one in two years because I frankly felt like crap. Working my way up to longer miles again. Did any of the organized events help you out with food? I’m thinking of asking them to transport some snack/lunch bags for me to the rest stops and leave one for the end while they pound the pasta.

Interesting to find another Celiac cyclist. I too don’t have the same energy or recover as well as I used to and I am not struggling with low weight anymore. I did have to go paleo/SCD type diet to get healthy GF wasn’t enough for me.

My (amazing, patient) husband just came across your blog and forwarded it to me. I just want to tell you how much I appreciate what you’ve written & shared. I was diagnosed with celiac in Feb. 2012 after being extremely sick for about 2 years. I made the mistake of jumping back into competitive racing 3 months later & was crushed to come in dead last in a discipline I used to easily win (TTs). I had no idea how long it takes to get back to 100% – something that used to be so easy (and fast!) to do. It’s comforting to know I’m not alone in this. I’m also happy that your wife is so supportive! My husband has been so patient with me being so freaking ill on & off the past 3 years. The rest of my family can’t understand why I don’t want to pump myself full of meds – and some (non-cycling) friends like to push food at me, saying, “oh come on, isn’t this (cake, pizza) worth a little stomach ache?” Sure, I’d love to not be able to keep any food in for the next 10 days.